The last three years have clearly demonstrated that the disability community is the canary in the coalmine. From attacks on the Affordable Care Act, proposed changes in how the Department of Education collects data, to attempts at rolling back Title III (Public Accommodations) of the Americans with Disabilities Act, Rebecca will give a state of the state on issues related to the disability community, from across policy areas and across disability constituencies. She will also share where there are opportunities for new strategies for positive policy change, strategic collaboration, and how we can hold the line to prevent further negative impacts on the rights of people with disabilities and our families.

Speaker Bio:

Rebecca Cokley is the Director of the Disability Justice Initiative at the Center for American Progress. Before founding the Disability Justice Initiative at CAP, Rebecca was the Executive Director of the National Council on Disability, an independent agency charged with advising Congress & the White House on issues of disability public policy. In the Obama Administration she served at the Departments of Education, Health & Human Services, and the White House where she ran diversity and inclusion efforts. Rebecca’s career has focused on making stronger connections across communities with groups like the Women’s March, the Ms. Foundation for Women, & the Leadership Conference for Civil and Human Rights. She is included in the Susan M. Daniels Disability Mentoring Hall of Fame and received the Frank Harkin Memorial Award by the National Council on Independent Living. Rebecca has a B.A in Politics from the University of California Santa Cruz.

10:15 - 11:25 Concurrent Session 1

Legislative 1

Legislative Town Hall

Speakers:

Senator Ernesto Lopez

Representative Valerie Longhurst

Representative Paul Baumbach

​​Additional speakers have been invited; participants may change depending on the legislative calendar.

Session Description:

Join legislators from Delaware’s General Assembly to discuss issues facing people with disabilities in Delaware in areas like employment, health services, housing, transportation, education and more. Participants may change depending on the legislative calendar.

Speakers Bios:

Representative Paul S. Baumbach grew up in Bel Air, MD. He received his Bachelors of Science from the University of Delaware, and his Master of Science from Villanova University. While attending the University of Delaware, he met his wife Pamela. They have been married since 1985 and live in Newark, DE. Their son Michael and daughter-in-law Jacquie also live close by in Newark, DE. Paul founded a financial advisory firm in Newark in 1996. Paul served for 2 years on the Newark Housing Authority Board and for 2 years as president of Progressive Democrats for Delaware. Paul’s current occupation is the Director of Investments for Mallard Financial Partners, Inc.

House Majority Leader Valerie Longhurst was first elected to the Delaware House of Representatives in November 2004 to represent the 15th District. The district consists of 20,000 people living in Bear, Delaware City and St. Georges. In 2008, she was elected as the House Majority Whip and served for four years. In 2012, her caucus elected her House Majority Leader. Representative Longhurst is currently chair of the House Administration, Ethics and Rules committees. She is also the former chair and current member of the Manufactured Housing Committee.

Rep. Longhurst has championed common-sense gun safety measures and has worked tirelessly to promote women’s equality in Delaware.

She has previously served as board member of the Police Athletic League of Delaware and now serves as the organization’s executive director. Rep. Longhurst is the proud mother of two young adult children, Peyton and Andrew.

Senator Ernesto Lopez made history in 2012 by becoming the first Latino elected in the history of the Delaware State Senate representing the 6th State Senate District. Senator Lopez came to Delaware as a young child from Puerto Rico with his parents and has lived in Delaware for over 30 years. He holds an Ed.D. in Educational Leadership from the University of Delaware where he has worked with children and families for two decades.

Session Description:Work is valuable for everyone. Individuals with disabilities experience staggering levels of unemployment, despite abundant evidence that people with disabilities can achieve and maintain gainful employment. Ms. Bates-Harris will provide a compelling case in support of competitive integrated employment opportunities, and discuss a variety of supports and services that can enable individuals with disabilities to pursue meaningful careers.

Speaker Bio:

Cheryl Bates-Harris works within NDRN’s Training and Advocacy Support Center. She has 22 years of experience working with people with disabilities and an in-depth knowledge of cross-disability issues, focusing on employment issues of people with disabilities, including Vocational Rehabilitation, Social Security and Return to Work (PABSS), and other work programs that impact people with disabilities. Since the passage of the Ticket to Work and Work Incentive Improvement Act (TWWIIA), Cheryl has conducted national training on the intersection of the Ticket to Work with state vocational rehab services. President Bush appointed her to the Ticket to Work and Work Incentives Advisory panel in 2004. A prime impetus behind Segregated and Exploited; the Failure of the Developmental Disabilities System to Provide Meaningful Work, she provides training and technical assistance to the Protection and Advocacy and Client Assistance Programs nationwide and has been an invited speaker at many national conferences.

Family 1

“Now What?” Resources for Parents of Infants and Toddlers with Disabilities

If your young child just received a diagnosis of a disability or there is a concern about a developmental delay or special need, you may not know where to begin. This session is for parents of infants and toddlers with disabilities, to learn about resources that are available to them, and lead them to the right support systems. This panel of experts will help parents understand basic information regarding services available for children under the Part C Program of the Individuals with Disabilities Education Act (IDEA), for children birth to three years old; understand their role in the development of an appropriate Individual Family Service Plan (IFSP); and how to be an effective partner with service providers. Come and interact with this expert panel and learn about supports and resources for your child and your family.

Speakers Bios:

Michelle Blankenship, MS, CCC-SLP is the Director of Therapy Services for Easterseals, overseeing the Early Intervention program. In her role as Director, Michelle leads a team of more than 50 therapists who provide services to children, birth to three years old, throughout the state of Delaware. Michelle is an active member of Delaware’s Part C State Systemic Improvement Plan, working to enhance intervention services for children and their families. Michelle graduated from Gallaudet University with a master’s degree in Speech Language Pathology in 1998. She is a practicing speech language pathologist, specializing in serving children with communication delays and feeding disorders.

Susan Campbell has been with Delaware Health and Social Services (DHSS) since 1997 and is currently the IDEA Part C Coordinator for the Birth to Three Early Intervention System. Prior to her employment within DHSS, Susan worked as a skills trainer at Elwyn Delaware and also for the Coordinating Council for Children with Disabilities. Her background in Human Services also extends to experience working in child care facilities and with Alzheimer’s patients in nursing homes.

Sarah Milner is a mother of three children ages 10, 8 and 5. Her youngest daughter received services through Child Development Watch (CDW) due to a speech delay, hearing loss and other medical challenges. Sarah participates as a parent voice on committees within the state including the Early Childhood Inclusion Committee (ECIC), the Early Childhood Personnel Center (ECPC) and is a member of the Delaware Interagency Coordinating Council (ICC). She graduated from Temple University with a Bachelor of Science in Early Childhood, Elementary and Special Education. Sarah has worked as a learning support teacher, a preschool teacher of students with Autism and currently works as a home visitor for the New Castle County Parents as Teachers Program.

Fiona KL Vivar earned her BS in Elementary and Special Education from the City College of New York City and her MS in Early Childhood Special Education from Adelphi University in NY. She taught for 18 years, starting at a skilled nursing facility and a school for children with special needs in NYC before moving to Delaware in 2000. She taught in the Appoquinimink School District before joining DOE as the Liaison for CDW for New Castle County. She maintains a caseload of families but is also responsible for monitoring the timely transitions of children from CDW into the public schools. She ensures that they adhere to federal guidelines, monitors children who are eligible for services according to Birth Mandate regulations, and provides technical support for CDW North family service coordinators and their families, service providers, school districts and other community partners.

Education 1

Coordinated School-Based Health Services for Students with Disabilities

School-based health centers (SBHC) are designed to reduce risky behaviors and improve health among children and adolescents through health promotion and education, early intervention, and preventive care. These services can include physical examinations; early detection of chronic conditions; treatment of minor and acute illnesses and health conditions, and detection of emotional stress and psychosocial problems for counseling and/or referral. Delaware SBHC utilize coordinated efforts to support students with disabilities through partnerships with special education, transportation services, and community systems. This session will outline how these coordinated partnerships support students with disabilities, featuring a panel presentation that will highlight the collaboration between a school-based wellness center and a school system. ​

Speakers Bios:

Amy Burnett MSN, FNP-C is a Nurse Practitioner and Supervisor of Wellness Centers for Bayhealth Medical Center. She has been a Registered Nurse for 27 years. She began her career working in pediatrics and cardiac ICU. Amy has worked at several major health systems throughout the country. She joined Bayhealth in 2003 and in 2008 completed her master’s degree as a Family Nurse Practitioner while working in the Cardiovascular ICU at Kent General Hospital. Since completing her degree she has continued to work for Bayhealth in their School Based Health Centers and at a local Urgent Care Clinic. Amy is currently working at Smyrna High School Wellness Center located in Smyrna Delaware.

Gloria James, PhD is the Bureau Chief of Adolescent and Reproductive Health at the Division of Public Health. She is currently the team leader for the overall management of 32 school-based health centers, 26 reproductive health clinics, the statewide Alliance for Adolescent Pregnancy Prevention, and the federal Personal Responsibility Program which both provide evidence-based programs to reduce pregnancy and sexually transmitted diseases among the adolescent population in Delaware. She received a BA from Wellesley, a MEd from Salisbury University and a PhD from the University of Delaware.

Tracy Lazar is a Licensed Professional Counselor of Mental Health (LPCMH) and a Co-Occurring Disorders Professional (CCDP). She primarily works with teens at the Smyrna High School Wellness Center but also works with ages 10+ at a private practice in Dover, DE. She has worked in the mental health field since she was an undergraduate student in 1999. She received her bachelor’s degree in Behavioral Science in 2001 and her Masters in Community Counseling in 2003. Tracy has worked in various levels of care including school based settings, outpatient, intensive outpatient, and partial hospitalization programs.

​

1:15 - 2:25 Concurrent Session 2

Legislative 2Now What’s Going on Legislatively in DC, and How Will it Impact Me?

The disability rights movement has brought about substantial progress and improved opportunities for people with disabilities. Landmark legislation has created meaningful change for people with disabilities and opened doors to employment, education, housing, and other access to community life. Recently, the federal government has begun re-examining and proposing changes to numerous existing federal laws, rules, and Supreme Court decisions which protect the civil rights of individuals with disabilities. Examples of laws, rules and decisions under scrutiny include, but are not limited to, the Americans with Disabilities Act (ADA), the Workforce Innovation and Opportunity Act (WIOA), the Home and Community Based Services (HCBS) Rule, the Individuals with Disabilities Education Act (IDEA) and the Olmstead decision. What would a world without these laws and protections look like for you and your family, and for other individuals with disabilities? What is the best way to advocate for you and/or your family member? The panel will discuss these questions and more in this interactive session.

Speakers Bios:

​Kayla McKeon is the Manager of Grassroots Advocacy for the National Down Syndrome Society. She is a Special Olympics athlete and a Special Olympics Congress member from Syracuse, NY. In 2011, she competed in the Special Olympic World games in Athens, Greece winning a silver and bronze medal in International competition. She is a member of the National Down Syndrome Society (NDSS) Self-Advocate Advisory Board (SAAB). Prior to joining the NDSS team, Kayla was a student at Onondaga Community College and LeMoyne College. She successfully completed several courses towards her Associate Degree in General Studies. Kayla also previously worked for Congressman John Katko (R-NY) and is the first registered Capitol Hill lobbyist with Down syndrome.

Ari Ne’eman currently serves as Chief Executive Officer of MySupport.com, an online platform designed to empower seniors and people with disabilities to self-direct their own services. He is also the co-founder of the Autistic Self Advocacy Network and served as its President from 2006 to 2016. From 2010 to 2015, Ari served as one of President Obama's appointees to the National Council on Disability, a federal agency charged with advising Congress and the President on disability policy issues. He is a consultant to a variety of groups on disability policy, including the American Civil Liberties Union, and is currently completing a book on the history of the American disability experience for Simon & Schuster.

Elizabeth Weintraub has a long history of leadership in self advocacy and has held many board and advisory positions at state and national organizations. She is a full-time member of the Association of University Centers on Disabilities (AUCD) policy team and also the host of Tuesdays With Liz: Disability Policy For All, where she attempts to make polices in accessible language so policies is accessible to all. Liz also had a fellowship with Senator Casey of Pennsylvania.

Prior to coming to AUCD, Liz worked for the Council on Quality & Leadership (CQL). Liz is a past trainee alumni from Georgia State University. She was a past chair of the Maryland Developmental Disabilities Council. Liz received the Dr. Cathy Pratt award for Professional of the Year award.

This session will explore the many possible technology solutions available for writers with a variety of skills and needs. In order to maximize the resources in the school district, we first look at the technology that is available to all students. For those students having difficulty with writing composition and/or handwriting legibility, general education technology, such as word processing, spelling and grammar check, or a thesaurus, are often sufficient to address their needs. If additional supports are necessary, we look to more specialized tools, which may include word prediction, electronic graphic organizers and text-to-speech or speech recognition software. We will also explore options to accommodate students with more complex needs resulting from physical and/or sensory limitations. These students will often require an alternate access method or material be presented in an alternative format.Speaker Bio:

Barbara Brooks, MA, CCP-SLP, began working in Colonial School District in 1996 as a Speech/Language Pathologist (SLP) at the John G Leach School, serving students with complex communication needs. A few years later, she became the Assistive Technology Coordinator.

She has supported students in the areas of reading, writing and augmentative communication in all settings. Most recently Barbara has successfully collaborated with district leadership in Curriculum and Technology to integrate resources and instruction for students with high-incidence disabilities. She has presented at state and national conferences in all areas of Assistive Technology and procured multiple grants for equipment and training for the district.Family 2Supporting Healthy Sexuality and Relationships Across the Lifespan

Want to hear more about how best to support people with disabilities in healthy sexuality and relationships? This session is for you! The panel will discuss the resources available through their Delaware-based programs. The session will be primarily devoted to answering YOUR questions. Questions could be about providing or how to find support and information in dating and relationships, safer sex, consent, sexual self-advocacy, internet safety and more.Speakers Bios:

Dr. Catherine Dukes is the VP of Education and Training for Planned Parenthood of Delaware's Sexuality Education Training Institute since 2006. Since that time, she has led her department in winning three national Planned Parenthood education awards. Dr. Dukes holds a PhD in Human Sexuality and a Masters in Social Work. She has had lesson plans published in the curricula "Teaching Safer Sex" and "Sex Ed in the Digital Age" and the soon-to-be-published "Sexual Orientation" curriculum Dr. Dukes is a regular speaker at national conferences and was the co-chair of the 2013 National Sex Ed Conference.

Cory Nourie is the Patient Transition Social Work Coordinator at Nemours AI duPont Hospital for Children, where she and her physician-partner offer the Transition PLAN (Preparing for Life After Nemours) clinical service for young adults with disabilities and complex medical needs. In addition to addressing sexuality through clinical visits, she has led Healthy Sexuality workshops for young adults with disabilities, and their caregivers, through a Developmental Disabilities Council grant for the past year. Ms. Nourie has dual Masters degrees in Social Services and Law and Social Policy from Bryn Mawr.

Isabella Weber has been a Program Coordinator for Planned Parenthood of Delaware’s Sexuality Education Training Institute since 2015. She teaches evidence-based sex education in middle and high schools; provides individual healthy relationships and sex education for adults with cognitive disabilities; and co-leads professional trainings on sexuality topics. Isabella is a curriculum trainer for Our Whole Lives, a faith-based, comprehensive sexuality education curricula. She holds a Master’s of Public Health degree from the University of Michigan.

Education 2Encouraging Parents and Students to Take Ownership of Their IEP

Multiple studies have shown that students with disabilities who actively lead and/or participate during their Individualized Education Program (IEP) meetings are more likely to be competitively employed and/or enrolled in higher education after graduation. Parents are often misled into thinking that they are only a bystander in the process and do not feel empowered to lead the direction of their child’s IEP. Providing students with disabilities with the resources and support that they need to lead their own IEPs helps students to self-direct the course of their lives. Providing parents with strategic methods of taking a leading role in their child’s plan makes them active team leaders not just participants. Session participants will hear about helpful resources, tips, strategies, and real-life experiences that will empower students and parents to take charge of their IEP, their education, and their future.

Speakers Bios:

Greg Gouge is an artist currently living with his family in Laurel, DE. Although Greg has lived with mental health challenges for most of his life, he was able to participate in the Jr Partners in Policy Making program in 2007. Two years later he completed the adult program, where he learned the importance of being able to advocate for himself. When the program was in danger of losing their funding, Greg was asked to speak at Legislative Hall to share his story and the importance of programs like this that teach people with disabilities how to have a voice in the direction their lives take. After Greg spoke, the funding was approved. Greg later went on to be an Assistant Teacher for JR PPM for two sessions.

In addition, Greg is recovering from a very recent car accident that left him with 29 broken bones, a collapsed lung, a severe traumatic brain injury and a stroke that affects the left side of his face and right side of his body. In spite of his many challenges, Greg remains optimistic, joyful and eager to return to his job, beloved art and to participate in programs such as the LIFE Conference.

Zachary Simpler was born as a preemie in 1999. He was diagnosed at an early age with Soto’s Syndrome. This diagnosis has never stopped Zach from aiming high. Zach doesn’t see himself as different from anyone else and as a result he has never hesitated to jump into an activity, sport, or project that any of his peers are trying. He has always participated in Boy Scouts, camps, play groups, and sports. As he got older, he began playing baseball and swimming competitively on a team. With Special Olympics, Zach is on the bowling, basketball, cross country, golf and swim teams. The encouragement and success that he saw in these events gave him the push he needed to join sportsteams at school, including cross country, track and swimming.

Zach is a proud member of the Rehoboth Beach Volunteer Fire Company, as well as his school’s Leo Club and Honor Society. In the last year, Zach has started to advocate for himself by participating the Summer CLSC program at the University of Delaware. During the recent legislative session Zach advocated for legislation that impacted children and adults with disabilities and will have a long term impact. He has met with policymakers to advocate on disability issues and saw two important bills pass during the most recent legislative session. Zach feels that it is important to advocate for yourself because only you know what you really want.

Melissa Stansell is a Parent Advocate with three children. Her son Ryan has severe non-verbal autism. Ryan’s needs drove her to forgo her career in exchange for work-from-home work, allowing her the time to advocate for him.

Utilizing her passion for public speaking, she began sharing her story. Melissa has spoken at the Assistive Technology Industry Conference, AI Dupont Hospital, Brandywine School District and is a frequent speaker at the Univ of DE.

In 2014 she was appointed to the Governors Autism Education Task Force and fought to pass legislation that created the Delaware Network for Excellence in Autism and will improve the Delaware Autism Program to provide support to students in every school district in Delaware. Melissa is a graduate of Partners in Policymaking and is a member of the Board of Directors of Autism Delaware.

2:35 - 3:45 Concurrent Session 3

Legislative 3Empowering Parents to Become Effective Advocates for Their Children

What does an ideal day for your child look like? Are your expectations met? How do you communicate with professionals who can make a difference in your child’s life? Does your child receive all of the supports and services needed to help them be the best they can be? This session will help address those questions and provide real life examples of how to improve your advocacy efforts to achieve results. ​Speakers Bios:

Amy and Rick Kosmalski have spent years advocating for their daughter Kayla (12) who has Down syndrome. They served on many local and national boards, attended local and national conferences, started a nonprofit called 321foundation with other local families, and built a strong social media following. Most notably, they led efforts to get Delaware’s ABLE savings account program passed in the legislature known as “Kayla’s Law.” They have learned key strategies that will help you and your child be better advocates for themselves and our community. Independence 3Cortical Visual Impairment: An Introduction to Characteristics and Phases

Speaker:

Chris Russell, MS Ed, TVI, CVI Range Endorsed Educational Specialist​

Session Description:

Cortical Visual Impairment (CVI) is the leading cause of visual impairment in children in the western hemisphere. As many of the children/youth who have CVI do not present with additional ocular impairments, they often receive normal results on clinical vision exams, because the damage resulting in abnormal vision is not in the structures of the eyes, but in the connection between the eyes and the brain. Children with CVI present with unique visual behavioral characteristics, across a range of visual functioning and adaptive needs. Due to the nature of this neurologically-based visual impairment, children/youth with CVI can achieve significant progress in visual functioning – given the appropriate supports and meaningful interventions.

This session is based on the CVI Range approach to functional vision assessment and educational interventions developed by Dr. Roman-Lantzy, and will provide an overview of CVI, with a focus on understanding and identifying the 10 unique visual behavioral Characteristics and 3 Phases of CVI. Participants will gain both technical and practical knowledge and skills to support the range of students with CVI, as well as meaningful and personalized experiences in considering the development of AAC to support their students.

Speaker Bio:Chris Russellis the Project Coordinator for the New York Deaf-Blind Collaborative and has experience as a classroom teacher and Teacher of the Visually Impaired (TVI) working with children who have visual impairments and additional disabilities including deaf-blindness. Chris specializes in severe and multiple disabilities including deaf-blindness, cortical visual impairment, curriculum adaptations for children with visual impairments and additional disabilities, and instructional strategies supporting communication development for children with pre-symbolic communication. He has the Perkins-Roman CVI Range Endorsement, and conducts training in CVI Characteristics, Phases, Assessment and Intervention across NY state for professionals and families.

Family 3Now What? Aging in Place in the Community—Community Resources You Can Use

According to the most recently published data projections from the Delaware Population Consortium, the number of Delawareans who are over the age of 65 is expected to grow by more than 75 percent by the year 2050. Have you thought about future planning for aging, either for yourself or a loved one? Join us for this interactive discussion, where panelists will share information and resources for aging adults and/or their caregivers, with an emphasis on maintaining self-direction and living the life YOU want in the community.

Speakers Bios:Dava Newnam was appointed as Director of the Division of Services for Aging and Adults with Physical Disabilities in August of 2017. Her most recent role in the Department of Health and Social Services prior to her appointment to DSAAPD was as Deputy Director of the Division for the Visually Impaired. Dava brings with her a strong finance and budget background having served as Chief Financial Officer to the Division of Services for Aging and Adults with Physical Disabilities, administering a budget of state and federal funds which at a times was in excess of 80 million dollars, as well as other accounting and financial positions throughout her career at DSAAPD and also the Department of Children Youth and Their Families. Dava has 23 years of state experience with 20 years having been spent serving those who are aging or physically disabled.

Marie Nonnenmacher, Division of Developmental Disabilities Services (DDDS) Director since February 2018, has served in a leadership role within the division since November 2012. Some of the things about which Marie is proudest during her time with DDDS was the expansion of the DDDS waiver to cover people living in the family home and services designed to meet the needs of those individuals and the creation of Delaware’s first Medicaid-funded Targeted Case Management service for DDDS clients. These two initiatives leveraged federal funding to help stretch DDDS’s limited state dollars.

Prior to joining DDDS, Ms. Nonnenmacher had been in leadership positions with the Division of Medicaid & Medical Assistance, the Department of Services for Children, Youth & Families and the Office of Management & Budget, beginning her career with the State in 1981 at the Department of Labor.

Ms. Nonnenmacher has a BA in Political Science and a Masters in Public Administration from the University of Delaware.

Elizabeth Romero is a public health professional with over 15 years’ experience in health equity, population health, policy, and environment change at multiple levels including national, federal, state, community and hospital systems.

Ms. Romero currently serves as director of the Division of Substance Abuse and Mental Health where she manages a budget in excess of 130 million dollars, 500+ state staff, and a variety of community mental health and addiction services providers. She oversees operations of the single state mental health hospital and administration of federal and state funds for the planning, development and maintenance of the public sector behavioral health system for adults. She works closely with the executive, judicial and legislative branches of state government as well as community-based non-profit agencies.

Some groups of youth, including students with special needs, are at increased likelihood for using substances and engaging in other behaviors that may have negative health and social outcomes. This session will highlight Delaware data from the Youth Risk Behavior Survey, including risk behaviors as well as protective factors.

Speaker Bio:

Sharon Merriman-Nai is an Associate Scientist at the Center for Drug & Health Studies, University of Delaware with a special interest in issues that impact older individuals and vulnerable adults. As a former mental health clinician and consultant, she has worked extensively with older clients and others who survived abuse and trauma. Current initiatives include the evaluation of the Delaware Department of Education DASH HIV/STD/Pregnancy Prevention Program, the school-based surveys, and the Strategic Prevention Framework, and in May 2016 she collaborated with Professional and Continuing Studies on UD's first multidisciplinary elder abuse conference. Ms. Merriman-Nai is also the director of the Clearinghouse on Abuse and Neglect of the Elderly (CANE). A former co-manager of the National Center on Elder Abuse, she has been with the University of Delaware since 2001, working previously in the School of Public Policy and Administration Center for Community Research & Services.